Accepting My Child Will Never Walk

I remember reading, a few years back, about someone with cancer feeling inadequate because they weren't running marathons or raising millions of pounds for charity. They were 'just', you know, getting on, turning up for chemo, hoping for the best. I've read too about people who've become depressed (understandably) as the cancer has taken hold; felt like giving up. But those aren't the stories that make the papers; people don't want to read about that. They want INSPIRATION. Defying the odds... That kind of thing. Not just ... Well you know ... The everyday kind of suffering.  
I wondered how it would feel to have cancer and read about the people running 26 miles when you're barely fit to get to the end of your bed. Do you think 'fair play', or do you feel guilty, or unworthy, or maybe that you're just not trying hard enough?
Mind over matter and all that!
Hugh's undiagnosed condition has left his muscles very floppy. He can't walk or si…

Wheelchair Accessible Tanks



When I was little I wanted to drive a VW Golf. Bit of a random choice I know, but it was down to a game my brothers and I used to play called 'car capers' and the Golf was always my favourite. When I got older and (finally) learned to drive I had whatever car I could afford at the time, but given a choice, if money were no object, I'd have loved a little mini or a beetle. Or even a micra. The key here being that I wanted a small car. Little. Cute. Compact. Easy to get into parking spaces. That kind of thing. I'm 5ft 1. A little blue mini would suit me perfectly.
Never, not in a million years, did I covet a van! A great big heaving hefty lump of awkwardness? An ugly enormous monstrosity impossibly difficult to park.? Nope. No thanks. Not for me.

Then along came Hugh. And with him came tonnes of gigantic and cumbersome equipment. No little fold away neat little strollers for us. We had a huge over-sized special needs buggy which even a world champion body builder would struggle to fold and lift into the boot of a car. Along with oxygen and the feeding pump and the bottled feeds and the beanbag ... Just a night at my mums required so much flipping stuff!

I'll admit I was vain when I first began looking for a motability car. I wanted a 'car' not something that looked like a van. I was adamant I could lift Hugh in and out. I pretty much refused to consider any alternative. But even at that, even lifting Hugh into a car (rather than pushing him in in his wheelchair)  I'd still need a giant of a car! I eventually chose a VW Sharan and with its side sliding doors and huge boot space it was perfect... For a while. 

People aren't always sure what is meant by a motability vehicle. I even know of people who have been told they're lucky to be getting a free car. Let's just be clear here- there's nothing free about this car. A motability car is leased for 3 (or 5) years and rather than pay you the DLA (disability living allowance) you are entitled to the government pays it directly to the car dealership. That's it. It's kind of cutting out the middle man. But it is definitely not about giving free cars to people. Anyway ...back to the story

So Hugh started growing, as children do. And the bigger and heavier he got, the more I struggled to lift him. Until I eventually realised we've reached the point where we need a wheelchair accessible vehicle (WAV).


I've searched online and contacted a few dealers. It looks like we'll need a medium sized WAV rather than a small one as I specifically want enough seats to take the 4 of us plus a carer for Hugh if I need to. Also I don't want Hugh to be right at the back of the car- I need to be able to see him and get to him quickly in the event of a seizure. I'm keen to have enough space to fit in his ginormous beanbag or his trike both of which take up quite a bit of room. I also need to think about whether we want a lift or a ramp to get him in the back of the car. I've heard pros and cons for both but I think I'm leaning towards ramped access so long as the rear of the car is low enough to ensure the ramp is neither too steep nor too long. And I'll definitely need parking sensors! Heaven knows how I'm going to manage to drive and park something the size of a small tank! Another thing to consider is the advance payment- the non-refundable payment that we need to provide upfront (this is not covered by the DLA). It looks like this will be upwards of around £5000. However one option we may consider is to look at getting a nearly new model as the advance payment on these can be less. 

So there's a few months research ahead and then we'll be making the swap to a WAV. Can't say I'm looking forward to it to be honest but my back will thank me and I'm sure it will be better for Hugh. 

Might be worth giving me a (very) wide berth if you see me driving around though! 





Comments

  1. If it's big enough you can fit the mini inside then you can have your little car for when Hugh is at school and the tank for when you have Hugh with you. You can drop Hugh off and then drive your mini down the ramp like in a film ... just a random thought for late on a Sunday night haha
    Good luck in finding something suitable. Xx

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    1. Now I do like that idea! Good thinking Claire xx

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  2. We own the A team van you have in one of your pictures. It's a bastard to park when I dont have Dominic with me

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    1. I bet! That's the thing with these blue badges- fab when you've got the kids with you- great big wide spaces but when you're stuck with an enormous van and trying to squeeze it into a regular space!!! Eek!
      Have you decorated it like the a team van? Please say you have 😊

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  3. Oh my gosh, this was like reading my own story! The determination to lift in and out and the very stark realisation that isn't possible. We had a small WAV at first, but had to request an early change in contract due to a baby coming along (the baby is now, almost, six) and as you say now we have 'a tank'. My advice, spend a long time testing, and I don't mean the drive, I mean the adaptions. Our first car was great, the one we have now was not good at all and I just had to spend £1200 on getting the adaptions modified. If you don't go for a lift and opt for the ramp (as we did) can I suggest having a winch fitted if your little ones wheelchair is not powered, because it got to the point a few months ago whereby I couldn't get my son in (my boy, plus the weight of the chair pushing uphill was too much - I am quite small) so I was left with a vehicle I couldn't use (hence the £1200 on modifications - ie winch fitting and anchor points resetting) WAV's are great, in one way - they get you out and about - in others not what you dream at all. My only other piece of advice, if you have tinted windows in the back be sure to stipulate you don't want the back screen tinted. Not only is it difficult enough to reverse due to the size I also have a gamgster black out going on lol. I promise you do get used to driving it though, they are just my tips from mistakes I made (our's required a £6,500 down payment, bit of a jump from the regular cars I agree). But it gets you mobile and that is worth it. Hope this helps.x

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    1. Wow, thanks Lynsey - loads of really good advice here. Really appreciate that. I wouldn't have thought about the winch or the tinted windows (the Gangsta black outs made me laugh!!!) You're right though - it makes sense to get it right now or could be even more costly in the long term. Thanks again for your help.

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